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April 23, 2015

A Long Journey to a Seizure-Free Life

By Hoyt Finnamore

In December 2014, Gregory Cascino, M.D., a neurologist at Mayo Clinic, received a photo of a former patient. Kate Seifert was standing at the top of Mount Kilimanjaro in Tanzania, almost 20,000 feet above sea level, at the mountain’s Uhuru Peak. The photo was accompanied by a note from Seifert’s mother.

“We will be forever grateful for the miracle you and everyone at Mayo Clinic gave to Kate and our family,” wrote Karen Seifert.

The story of that miracle begins 20 years earlier, when Kate, then a high school student in Appleton, Wisconsin, began having seizures. “I had my first complex seizure in the middle of a basketball game,” she says. “I was on my way back to the bench and fell on the ground shaking.” After a visit to the emergency department and an appointment with her primary care physician, Kate was referred to a neurologist. She was diagnosed with epilepsy.

Initially, the diagnosis had seemed to come without warning. But as Kate learned more about the condition, she realized she had been having partial seizures for several months.

“I’d have episodes where I’d feel like someone else was controlling my thoughts, or times where the corners or a wall would look huge, but the rest of the wall would look normal,” Kate says. “My mom had wanted to take me to a psychiatrist.” As the family’s epilepsy education began, they realized these episodes were sensory seizures. Soon, Kate would be having those seizures daily.

Initial treatments

Kate was prescribed medications to control her seizures. But none eliminated the seizures, and the medications themselves came with side effects. “We’d try a new one every three to six months,” she says.

“It definitely had an impact on my life,” Kate says of her diagnosis and treatment. “I was benched in basketball. I turned 16 but couldn’t get my driver’s license because of the seizures. The medication I took made me tired, so I slept 10 to 14 hours a night. That put a damper on my social life as a high school and college student.”

A few years after her diagnosis, Kate had a vagus nerve stimulator implanted in her chest to try to control the partial seizures. The device, which works like a pacemaker, sends electrical impulses to one of the vagus nerves in the neck. That impulse travels to the brain stem, which sends signals to specific areas of the brain that affect seizures.

“I had seizures everywhere ... I had to have ambulances called for me so often that my family started calling them ‘Kate taxis.’” - Kate Seifert

The vagus nerve stimulator and medications reduced certain types of seizure, but the complex partial seizures became more frequent.

She tried not to let them dictate how she lived. “I never felt sorry for myself. Complaining or being sad didn’t help. I always tried to be optimistic,” she says. “I lived a relatively decent life.”

Neither Kate nor her parents let epilepsy stand in the way of educational goals or travel. She spent three weeks in Spain during high school and a semester in England during college. After graduation, she decided to follow in her mother’s footsteps and become an attorney, spending a semester in Australia during law school.

When a seizure inevitably struck, Kate often used humor to cope.

“I had seizures everywhere,” she says. “I had them in the library, in the tube in London, in Scotland. I had to have ambulances called for me so often that my family started calling them ‘Kate taxis.’ The easiest thing to do was to be light about things.”

An escalating problem

After graduating from law school, Kate began working as an attorney in Oshkosh, Wisconsin.

“Everyone knew I had epilepsy,” she says. “I had seizures in the middle of courtroom proceedings. The people that I worked with never said, ‘Why don’t you go on disability?’ They supported me. Everyone knew this was my life.”

Then, that life began to change.

“My seizures started to get really bad,” she says. “I’d have grand mal seizures that would last three hours. I had a particularly bad one and slept for two days afterward. Even three or four days later, I still wasn’t fully me.”

“I’d gone to Mayo years before, but at the time I wasn’t ready for the aggressive treatment approach they suggested,” she says. “But quality of life had become an issue. I was having bigger, longer seizures that took longer to recover from. I was ready to consider more aggressive treatments.”

Kate met with Dr. Cascino and W. Richard Marsh, M.D., a Mayo neurosurgeon, who recommended surgery to remove the part of her brain where the seizures were originating.

“The care at Mayo was amazing. I had to stay in bed, and the nurses knew how uncomfortable I was. They massaged my legs to keep the blood flowing. They came in just to keep me company. They’d bring me anything I wanted.” - Kate Seifert

“At this point, I was told there was a 50 percent chance surgery would be successful, and a 50 percent chance I’d end up with a brain injury,” she says. But those odds could improve, depending on where her seizures were originating.

To find out, Dr. Marsh removed a portion of Kate's skull and placed electrodes directly on her brain to record electrical activity via electroencephalogram (EEG). Then, she settled into the hospital for observation.

“They needed me to have seizures so they could pinpoint the location where they originated,” Kate says. Over a two-week period, she was asked to do things that might trigger seizures, including going off of her medication, staying up late and drinking alcohol.

“I was actually prescribed a shot of Jack Daniels,” she says with a laugh. She kept a copy of that prescription.

“The care at Mayo was amazing,” she says of that time. “I had to stay in bed, and the nurses knew how uncomfortable I was. They massaged my legs to keep the blood flowing. They came in just to keep me company. They’d bring me anything I wanted.”

At the end of the observation period, Dr. Marsh delivered some good news.

“They’d figured out where the seizures were coming from,” Kate says. But surgery still would not be without risk. Statistically, she would face a 1 to 2 percent chance of brain damage.

“After he told me that, Dr. Marsh touched his heart and said, ‘But in my heart, I say zero chance.’ That was the most emotional moment of the whole experience for me. It was like a scene from a movie. Dr. Cascino and Dr. Marsh were always so informative and so caring. They knew how important this was to me. I didn’t always know what questions to ask, but they knew what information to give me.”

After discussing the potential risks and benefits with her parents, Kate decided to move forward with surgery.

A risk leads to a new life

In March 2007, Dr. Marsh removed three grams of brain tissue from the area that had been identified as the source of Seifert’s seizures. Three days later, she left the hospital.

She has not had a seizure since.

Freedom from seizures and medication has given Kate the chance to quickly achieve a number of milestones that epilepsy had forced her to postpone. She’s gotten her driver’s license and bought her first car. She started her own law practice and bought a house. And she began exercising again, running marathons and half marathons, and completing a couple of triathlons.

“The medication I took made me so tired I had no energy to run,” she says. “So exercise was a piece of my life I got back.”

Another piece was traveling, which she had given up when her seizures were at their worst. Since 2012, she’s been to Italy, China, Australia, New Zealand, South America and, most recently, Tanzania.

“I was very fortunate to have the outcome I did, and with no brain damage,” Kate says. “I wish I had a picture that could make me thankful for that every day. Because I don’t always think about it anymore.”

But sometimes she does. Like when she sees other pictures, including the one where she’s on top of that mountain in Africa. Which seems a small hill to climb, considering the journey she was on for years before she reached the top.